Friday, February 19, 2010

Labelled, Catergorised and boxed for the sanitised society.

As you can probably tell this post is NOT about running. It's about my son D.

I think I mentioned in a previous post that we were paying for him to be assessed for 'Autistic Spectrum Disorder' [ASD]. Well, the assessment happened last week and the report was given to us yesterday.

I should just say that my husband and I were unsure about all of this. To us, our son is just great. Yes, he does have his quirks and issues, but nothing that we think is a detriment to his character. I suppose he is a little 'eccentric' but he does not deliberately harm or cause offence. We like his quirks and think that in 20 years time they will be benefit to him than a hindrance. There are times I wish he wouldn't talk about molecules, particles and atoms when I have just roused myself out of bed and I can still taste the toothpaste. Although I am pretty sure he isn't impressed with me shouting, 'I don't care about how water is made, I just want to drink my coffee'. See we are all quirky!

However, this isn't 20 years in the future. For the next 18 years he has to deal with the western education system. Here his quirks will not be appreciated. His boundless energy will send him to the Principle. His constant talk on Science will be ignored by his peers and teacher. His parroted scripts for social situations will just label him as a freak.

So with him entering Kindergarten this September and the fact that any outside help hinges on an diagnosis, we spent the money and had him assessed. *Shudder* Even now my hand shakes as I remember handing over the credit card to pay the bill. It felt like I was paying for a share in an oil producing nation instead of a dozen hours with paediatricians, psychologists and SLP's.

Firstly, I have to say the assessment was brutal. I have to hand it to the kid, he coped remarkably well. He had 4 assessments in 3 days. Three of the assessments were to test his IQ levels at different situations. There were endless questions. I was exhausted just trying to keep him in a stationary position just to do the tests. He had to cope with staying still AND doing the tests. It was the one week where normal parenting behaviour went out of the window. We begged, we bribed, we cajoled. I think we spent more in bribery just to get him there, than we did on the tests!

So despite the weekend to recover and the few days after chilling out, we walked, like zombies, (or new parents - they both have the same look) into the paediatricians office. We sat there waiting, wondering; what they were going to say?Was the thousands we paid enough to get what we (what he) needed worth it? Should we have just forgotten about the assessment and had a holiday somewhere warm? Just think of all the running gear I could have brought? (I had to get running in there somewhere - it's my second reason for living and the point of this blog!)

The paediatrician said, "After taking all his tests into consideration, after seeing him first-hand and speaking to his current doctor, we have the diagnosis of PDD-NOS". (PDD-NOS is the mildest - but still qualifiable - type of Autistic Spectrum Disorder there is). It means something, but I have had two glasses of wine. If you don't know already, "google it". She promptly handed us some forms, signed them in front of us and announced, "This is what you need to get funding from the government". I know there should shock, or some type of grieving, but all I could think was, "Yes, he is going to get help and he won't be pressured to change". I know it is maybe sick or sad that I didn't feel anything but relief, but he is still my son. I still love him. I still love his quirks; he hasn't changed for me. All this means is that when he get's into school, his teachers will cut him some slack. He will be given money to help 'cover' his little quirks. I say 'cover', because I don't want his quirks to go away, I just want him to understand when they are appropriate. Like playing with yourself is NOT a good calming technique outside of the home!

So I suppose all in all, this will be the best 'heart-stopping' amount of money we will ever spend. It will recoup itself multiple times over in the resources he will get. I feel I should be sad for myself, my family and him that this has happened. I should feel broken that I don't have a normal little boy. I am not. He is a normal little boy to me. I am more heart-broken that he lives in a society; in a time, where he is not considered normal. He is bright - too bright according to his tests, but instead of being made to feel as if this is a gift to use well, he has to go through his education thinking it is a disorder. His eccentricity is not counted as something unique, it is counted as something to go to the Principles office. He has to tone down his behaviour, (which compared to some children is not malicious or intentional), so that the school can cope and educate the mean.

Maybe I have had too much to drink and this is making myself morose. Maybe I am just bitter that my experience of parenthood is more convoluted than most. I always had the impression that after the age of 5 you sent them to school and the teachers taught them everything they needed to know. Naive, immature and incorrect I know; but show me a parent who conceives a child thinking, "In 5 years time we will have to fight the education system so he can be who he is". Maybe, this post makes no sense to anyone and I am just rambling like usual.

Maybe I should go back and get myself another glass of wine and toast the wonderfulness of ASD. Heck, if Einstein had it then it is good enough for my son!

1 comment:

  1. so he has a label, so what? everyone is unique, if all of us had to be tested I'm sure the majority of society would be somewhat autistic. I know for me I have social anxiety, but until about a week ago I didn't know it was called that. Your son is normal, just unique. Tests are just tests, they don't evaluate the whole entirety of his humanness. I bet he grows up to be a great inventor/scientist/Nobel prize winner!

    check out Crunchy Chicken's blog...her son was also diagnosed...if you want.